My Experience Participating in an Observational Study
One afternoon in May, I got a call from a number I didn’t recognize, and I rejected it immediately. Given the number of spam calls today, I wouldn’t normally log that in my memory, but then I received a voicemail from the hospital where I was originally tested for Huntington’s inviting me to participate in a study.
I knew I wouldn’t likely qualify for an interventional study (such as a study in which a drug company enrolls participants to test its investigational therapy), but I was still very curious about the purpose of this study. I decided to give the coordinator a call, and I learned it was an observational study, with the goal of studying gene-positive people who are pre-symptomatic.
I recognize that any advancement in disease understanding could eventually lead to a cure, so I agreed to participate. I was told the study consisted of three visits, each spaced six months apart. Because the hospital is located near me, committing wasn’t an issue. I scheduled my first visit for July 6, which was this week.
When I arrived, the wonderful coordinator ran me through a panel of cognitive tests. She informed me that I shouldn’t focus on being “right” or “wrong,” but instead on just doing my best. While that is an important and excellent instruction, I felt frustrated every time I got something wrong due to my competitive nature. That being said, it was a fun challenge.
After the cognitive tests, I was taken for an MRI. For me, this portion of the study wasn’t a problem. It wasn’t my first MRI, and I love small spaces. It ended up being a nice break from my bustling past few weeks.
The biggest problem I had during the MRI was staying awake enough to listen to directions. (Plus, every time I dozed off, the items I was supposed to be holding would slip out of my hands.) As I lay there trying to keep my eyes focused on one point, I reminded myself that I was there for science and hopefully contributing to the hunt for a Huntington’s cure.
My competitive drive to perform well on the tests was probably the worst part of the day. All of the staff were friendly, I got to take half a day off work, and it was an interesting experience. I’m glad I was able to contribute in any way to Huntington’s research, and I look forward to finishing out my visits.
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